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Advocates and Voices. Swedish patient associations, their importance to individuals with cancer and collaboration with health care.

Carlsson, Christina LU (2005)
Abstract
Patient associations (PAs) have an increasing impact for their members and for the health care system. This thesis studies PAs for cancer patients (PACPs) ? currently with over 20 000 members in Sweden ? regarding coverage, activities, and collaboration with the health care system with specific reference to the members? experiences. Study I identified and characterized Swedish PACPs, their activities and member support. PACPs for patients with breast cancer and colorectal cancer were the most common. Collaboration with the health care system was reported by 69%, but only a third of the associations reported national collaboration and only one of 20 reported international collaboration. Study II investigated how 1 810 PACP members motivated... (More)
Patient associations (PAs) have an increasing impact for their members and for the health care system. This thesis studies PAs for cancer patients (PACPs) ? currently with over 20 000 members in Sweden ? regarding coverage, activities, and collaboration with the health care system with specific reference to the members? experiences. Study I identified and characterized Swedish PACPs, their activities and member support. PACPs for patients with breast cancer and colorectal cancer were the most common. Collaboration with the health care system was reported by 69%, but only a third of the associations reported national collaboration and only one of 20 reported international collaboration. Study II investigated how 1 810 PACP members motivated their membership. Motives related to having cancer were more often reported among members of PACPs for breast cancer (38%) and gynaecological cancer (36%) than members of PACPs for prostate cancer (25%), whereas information and activities were dominant reasons for membership in the latter group. Study III assessed how the contact person (CP) activity was perceived by members with breast cancer and demonstrated that shared experiences give new perspectives on having cancer, that feelings of isolation are part of the disease identity, and that relations with others enable self-help. The relationship between the PACP member and the contact person is sensitive, however, and failure to meet with the patients? needs and expectations may strengthen feelings of isolation. Studies IV-V investigated experiences from collaboration between PACPs and health care. Participants in a network aimed at improving cancer care described their experiences. The themes that emerged reflected the impact of communication and networking, of learning, of innovation and development in cancer care, and of the PACPs members? individual cancer experiences. After five years of networking, PACP members and health care professionals who remained in the network described their experiences and different voices emerged: the hesitant, the enlightened, the liberated, and the representative voice. In summary, our studies have characterized Swedish PACPs and their activities, have demonstrated how PACP members motivate their involvement and how CP activities are experienced, and have identified benefits and difficulties in networking between PACPs and health care. (Less)
Abstract (Swedish)
Popular Abstract in Swedish

Patientföreningarnas (PF) betydelse för sina medlemmar och för hälso- och sjukvårdssystemet har ökat och kommer sannolikt att öka. Denna avhandling studerar PF för cancerpatienter (PFCP) med avseende på utbredning, funktion, aktiviteter, och samverkan med hälso- och sjukvården utifrån föreningarnas och medlemmarnas erfarenheter. Studie I idenitifierar och beskriver svenska patientföreningar, deras aktiviterer och medlemsstöd. PFCP för patienter med bröstcancer och colo-rectal cancer är mest frekventa. Samverkan med hälso- och sjukvården rapporterades av 69% av PF, men endast en tredjedel rapporterade nationellt samarbete och 20% rapporterade internationellt samarbete. I studie II undersöks hur... (More)
Popular Abstract in Swedish

Patientföreningarnas (PF) betydelse för sina medlemmar och för hälso- och sjukvårdssystemet har ökat och kommer sannolikt att öka. Denna avhandling studerar PF för cancerpatienter (PFCP) med avseende på utbredning, funktion, aktiviteter, och samverkan med hälso- och sjukvården utifrån föreningarnas och medlemmarnas erfarenheter. Studie I idenitifierar och beskriver svenska patientföreningar, deras aktiviterer och medlemsstöd. PFCP för patienter med bröstcancer och colo-rectal cancer är mest frekventa. Samverkan med hälso- och sjukvården rapporterades av 69% av PF, men endast en tredjedel rapporterade nationellt samarbete och 20% rapporterade internationellt samarbete. I studie II undersöks hur 1810 PFCP medlemmar motiverar sitt medlemskap. Motiv relaterade till cancer var den vanligaste anledningen i PFCP för bröstcancer (38%) och för gynekologisk cancer var det 36% och för prostata cancer 25%. Information om cancer och aktiviteter i föreningarna var den vanligaste anledningen att fortsätta vara medlem inom prostacancergruppen. I studie III studeras hur kontaktpersonsaktiviteten (KP) uppfattas av medlemmar med bröstcancer. Studien visar hur delad erfarenhet ger nya sätt att se på att ha bröstcancer, att känslan av isolering är en del av sjukdomsidentiteten, och att relationen med andra möjliggör hjälp till självhjälp. Emellertid är relationen mellan PFCP medlemmar och KP känslig, och misslyckas KP att möta patientens behov och förväntningar kan detta förstärka känslan av isolering. I studie IV och V studeras erfarenheter från samverkan mellan PFCP och hälso- och sjukvården. Deltagarna beskrev sina erfarenheter från att delta i ett nätverk som hade till syfte att förbättra cancervården. Teman som framkommer beskriver hur kommunikation och nätverksbyggande formas av lärande, innovationer och utveckling i cancervården och PFCP medlemmarnas personliga cancer erfarenheter. Efter fem år av nätverk, beskrev kvarvarande PACP medlemmar och hälso- och sjukvårdspersonal sina erfarenheter och olika röster kunde fångas upp: den villrådiga, den upplysta, den frigörande, och den representativa rösten. Sammanfattningsvis har studierna beskrivit de svenska PFCP och deras aktiviteter, visat hur medlemmarna motiverar sitt medlemskap och hur KP-aktiviteter erfars samt möjligheter och svårigheter som kan uppstå i nätverk mellan PFCP och hälso- och sjukvården. (Less)
Please use this url to cite or link to this publication:
author
supervisor
opponent
  • Associate Professor Salander, Pär, The Institution for Social Work, Umeå Unviversity
organization
publishing date
type
Thesis
publication status
published
subject
keywords
support, Patient associations, voluntary action perspective, cancer, membership, contact person, network, Cytologi, cancerology, oncology, Cytology, experiential knowledge, advocates, consumers involvement, voice of medicine, onkologi, voice of lifeworld
pages
126 pages
publisher
Oncology, Lund University
defense location
Fernströmssalen, BMC, Lund
defense date
2005-04-15 13:00:00
ISBN
91-85439-12-6
language
English
LU publication?
yes
additional info
C Carlsson, D Killander, M Omne-Pontén and U Sätterlund Larsson. 2001. Voluntary associations for cancer patients in Sweden: supportive activities. Supportive Care in Cancer, vol 9 pp 581-590.
C Carlsson, A Baigi, D Killander and U Sätterlund Larsson. . Motives for becoming and remaining member of patient associations: a study of 1810 Swedish individuals with cancer. Supportive Care in Cancer, (inpress)
C Carlsson, M Nilbert and K Nilsson. 2005. Supporter or obstructer; experiences from contact person activities among Swedish women with breast cancer. BMC Health Service Research, vol 5
C Carlsson, M Nilbert and K Nilsson. . Patients' involvement in improving cancer care; experiences in three years of collaboration between members of patient associations and health care professionals. Patient Education and Counseling, (inpress)
C Carlsson, K Nilsson and K Segesten. . Captured voices: Experiences from networking between individuals with cancer experiences and professionals in cancer care. (submitted)
id
3b7e3821-f9cf-4572-a9cb-4290816036aa (old id 544570)
date added to LUP
2016-04-01 17:06:58
date last changed
2018-11-21 20:46:46
@phdthesis{3b7e3821-f9cf-4572-a9cb-4290816036aa,
  abstract     = {{Patient associations (PAs) have an increasing impact for their members and for the health care system. This thesis studies PAs for cancer patients (PACPs) ? currently with over 20 000 members in Sweden ? regarding coverage, activities, and collaboration with the health care system with specific reference to the members? experiences. Study I identified and characterized Swedish PACPs, their activities and member support. PACPs for patients with breast cancer and colorectal cancer were the most common. Collaboration with the health care system was reported by 69%, but only a third of the associations reported national collaboration and only one of 20 reported international collaboration. Study II investigated how 1 810 PACP members motivated their membership. Motives related to having cancer were more often reported among members of PACPs for breast cancer (38%) and gynaecological cancer (36%) than members of PACPs for prostate cancer (25%), whereas information and activities were dominant reasons for membership in the latter group. Study III assessed how the contact person (CP) activity was perceived by members with breast cancer and demonstrated that shared experiences give new perspectives on having cancer, that feelings of isolation are part of the disease identity, and that relations with others enable self-help. The relationship between the PACP member and the contact person is sensitive, however, and failure to meet with the patients? needs and expectations may strengthen feelings of isolation. Studies IV-V investigated experiences from collaboration between PACPs and health care. Participants in a network aimed at improving cancer care described their experiences. The themes that emerged reflected the impact of communication and networking, of learning, of innovation and development in cancer care, and of the PACPs members? individual cancer experiences. After five years of networking, PACP members and health care professionals who remained in the network described their experiences and different voices emerged: the hesitant, the enlightened, the liberated, and the representative voice. In summary, our studies have characterized Swedish PACPs and their activities, have demonstrated how PACP members motivate their involvement and how CP activities are experienced, and have identified benefits and difficulties in networking between PACPs and health care.}},
  author       = {{Carlsson, Christina}},
  isbn         = {{91-85439-12-6}},
  keywords     = {{support; Patient associations; voluntary action perspective; cancer; membership; contact person; network; Cytologi; cancerology; oncology; Cytology; experiential knowledge; advocates; consumers involvement; voice of medicine; onkologi; voice of lifeworld}},
  language     = {{eng}},
  publisher    = {{Oncology, Lund University}},
  school       = {{Lund University}},
  title        = {{Advocates and Voices. Swedish patient associations, their importance to individuals with cancer and collaboration with health care.}},
  year         = {{2005}},
}